I had a week off work last week for no reason other than I had holiday to use and figured that back in March, a random week off in June would work well.

I struggled that week more than I ever thought I would. Between all the hospital appointments I had scheduled and the inevitable ‘house hunt’ starting I struggled to fit in an ample amount of time to simply rest. I simultaneously struggled due to the lack of structure and routine I have settled into with work.

When I could fit in that much-needed-rest, I was just exhausted. I would sit in the park with my books and my laptop, ready to enjoy the sun when, in reality, I just sat there staring into the distance completely drained.

The fact I’d also gone through a period of work where I was finishing between 11pm and 2am every single night and having to work through the occasional weekend probably didn’t help either. It just meant I was exhausted before my week off, during my week off and now? Well, I’m exhausted after my week off.

I started a new course of treatment at the hospital. They are trying to ‘de-scale’ my head as my psoriasis is getting out of control. They call the process ‘tarring’ and yes, that’s right. I sit there in my beautiful hospital gown whilst they put tar and various other concoctions all over my head. I’m then wrapped up in cling film, a shower cap is placed onto my head and I sit there for a length of time whilst I ‘bake’. Following this, they sit with an incredibly fine comb and ‘de-scale’ my head. They literally dig and scrape at the psoriasis in the hopes of peeling it off my head whilst removing as little hair as possible.

They want to do this 2-3 times a week and I hate it already.

I hate the psoriasis on my head. It’s itchy and it hurts. It gets infected and it makes my hair fall out. I’m also constantly leaving a trail of dandruff looking flakes everywhere I go. But the thing is, it’s also the least of my worries.

Along with psoriasis I have, psoriatic arthritis, cerebral palsy, epilepsy, a Volkmann’s Ischemic Contracture, nerve damage and ruptured muscles, kidney problems, endometriosis and the list of illnesses I’ve had over the years feels endless.

Oh yeah, don’t forget the bulimia now.

I’m almost half-way through my training contract and the department I am working in now is where I want to qualify. It’s where I want to work for the rest of my life following my training which means I’m so incredibly conscious of the time these treatments are going to take up. I’m terrified of not being allowed to qualify here for whatever reason and so I’m equally desperate to not give them any stick to beat me with, so to speak.

What’s worse is the way I look after these treatments. I have bits of scale that haven’t quite made their way down my hair strands literally just sat there and my hair is the most greasiest smelliest mess you can imagine.

It is oh so easy for them or anyone reading to tell me to put up with incredibly greasy hair for a short while but when I’m already so caught up with my body image I can’t shake this feeling of ‘ugly’ that’s seething through my body lately.

Even today people have been looking at and some have even commented on my hair and I actually cried over it. I cried because I’m tired. I am tired of frequently having to go to the hospital for something or other. I am sick of all these different appointments, treatments and medications that I have. I am just sick and tired of being sick.

All my illnesses and disabilities drain me completely.

Forever wishing I could know what it felt like to be normal because I just feel broken.

I feel so damaged and that makes me feel unworthy. Unworthy of my job, unworthy of my friends….unworthy of love.

And it’s those feelings that the ED clings to. It’s those emotions that the ED thrives off. That’s when it’s at its worst but just because I know that doesn’t make fighting it off any easier.

Just because you see the smile doesn’t mean there isn’t anything hurting behind my eyes. Just because you see the food being eaten doesn’t mean there isn’t any fear behind every mouthful that I swallow.

I’m not pretending to be okay. I’m fighting to be okay.

And each day is getting better…I think so, anyway.

In fact, I know so.

But from the moment I wake to the moment I shut my eyes my mind is plagued with fears and doubts and questions. When will I eat? What is on my meal plan? Will I be hungry at the correct times and what if I’m not hungry at the right times? Will I lose weight? Am I going to gain weight? What if I break my plan and have a biscuit in that meeting at work? What if I want to purge later? What if I end up purging? What should I do tomorrow to make up for any slip ups today?

Even if I have my three meals and my one hour of exercise my mind is plagued with these thoughts and you know what, it’s tiring as hell.

It’s been 4 months of meal plans and increasing my exercise week-by-week and a massive reduction in both my restrictive and purging habits.

And here we are, still trundling along.

After I initially stopped the purging I did gain a few pounds, but in all honesty (other than the pesky number on the scales ruining my mood) it didn’t really change me or my body that much. I didn’t instantly become fatter from stopping the purging.

But I still had hoped that 4 months down the line, that I would have physically changed.

I do know I have some body fat to lose. I just desire my stomach to be flat. My stomach is the only part of me that I am so incredibly self-conscious about. It always has been.

Even as I am in the process of writing this out I simultaneously wish I didn’t care about my weight. I’ve sometimes spoken about wishing I was the girl I used to be who didn’t care about my weight or what people said. I realise today that, that’s a lie.

I was forced to pretend everything was okay. I supressed every single one of my emotions by putting on a smile and learning how to laugh the pain away (and comfort eating in the process). I wasn’t ‘me’…I wasn’t allowed to be me.

No wonder I snapped one day.

…

Is it normal to miss your illness?

I don’t know if ‘miss’ is the right word.

I don’t enjoy purging. I don’t enjoy restricting. I don’t miss not being able to get out of bed for being weak. I don’t miss the burning in my throat day and night. I don’t miss the cramping in my stomach from laxative abuse but maybe I miss all the lies it was telling me. The lies I believed.

Maybe I miss the false sense of control it gave me. The reassurance that I was going to be ‘better’ if I did what it was suggesting I do.

I need to find a positive in this post and I can find a good one – yes I initially gained some weight when I started eating 3 meals a day, but I haven’t gained more than those initial 4 pounds.

I haven’t suddenly become the fat girl I was scared of becoming. The fat girl I am still scared of becoming. I’ve just sort of hovered in this middle ground…little bit heavier…but a whole lot healthier.

I’m currently maintaining.

I’m writing this because I have a little bit of free time at work and I want to purge.

I want to purge even though I had 1 sandwich for lunch because…well let’s try to be honest…because deep down I don’t think this is about weight loss…I’m a little overworked, a little tired, a little self-conscious and a friend being cruel in the way she spoke about my ED a few nights ago has left me feeling vulnerable.

If I break it down further, the ‘fight’ on Sunday night left me remembering those who have used my ED to their advantage to control me. It made me remember and feel feelings of worthlessness and being taken for granted. It made me feel uncared for and ‘dumped’.

Let’s be honest, it just made feel shit.

Well at least I can pin point what’s triggering me this week.

I’m trying to remember that I’m a whole lot healthier than I was 4 months ago….4 pounds ago…

I wish being healthier didn’t hurt as much as it does right now.

They say actions speak louder than words but, just because my actions are those of a normal person, doesn’t mean the words my brain deals with aren’t deafening.

The pain cuts deep. It stings and it burns and I simply can’t hold back the tears that fall. Taken back to hospital just when I thought I was okay. Just like always, the hope comes crashing down, once relaxed but back on guard.

Always seem to be falling. Always dragged backwards against my will. Weighed down, feeling like I could drown.

It hurts more than the pain that has brought me back to hospital.

It hurts more than the pain I felt from June 18.

It aches and it hurts.

The word that there is something else wrong with me.

Another diagnosis, another condition, another something or other wrong with me.

‘Damaged Goods’ – that’s what I am and you can tell me I’m not but it won’t change how I feel right now.

Taken to surgery, kidney fixed. Endless list of medication for the time being and review booked in. It wasn’t even too serious; I’ll be better by the end of the month. But a month off work, a few weeks away from my best friend…it’s hard not to feel broken and lonely when that’s all that you can relate to.

I wasn’t able to eat – the illness took care of that. I didn’t have an appetite for 3 weeks and if I ate, my body couldn’t keep it down. Such a triggering situation and I’m working to keep it away. To not relapse over those feelings of ’empty’, the feelings I used to crave.

They said it’s likely to happen again but there’s not much I can do. Just drink excessive amounts of water and they’ll monitor the rest. Just when I was getting a grip on so many things, getting so much happier in myself, just something else. Always something else.

Dragging me back to reality.

My reality that I’ll never be normal. That I’ll always be a burden to those who have to help me. That I’ll always be ill, disabled…used…abused…broken or worse.

Wouldn’t it be nice to eat and drink without fear? To not have the nightmares? To not be rushed to hospital at 4am? To not have to have emergency surgery?

Give me a week and I’ll know it’s not true. I’ll realise I’m tough for dealing with all my crap. I’ll smile because I’ll be proud of every step I’ve had to take in my pretty shitty life.

I haven’t written for almost a month, in fact, I think it’s been almost exactly a month since I last wrote. Most of the times when I go silent it means something’s up, something I’m not quite ready to tackle head on but I’m pleased to say this time it’s quite the opposite.

To the north of mainland Greece there’s a teeny tiny island called ‘Skiathos’ and it is by far my favourite. I first came here when they told me I was too fat to represent my country at a Paralympic Games and whilst I arrived all doom and gloom I definitely left, yet again, quite the opposite.

So where else would I head to when I had about a month to myself? Where else would I go where my friends are more like family than my own? So yes, you guessed it, here I am in my favourite place in the entire world. 24 days down, 2 to go.

I thought I’d get bored or lonely at least once because just under four weeks is a long time. But fact of the matter is, I simply haven’t and I’ve loved every single minute. I’ve been meaning to write but I’ve just been so distracted with sun, sea and my family that I wish was my own. The only reason I’ve finally managed to sit down and type something out is because it’s stormy and windy today that I don’t really have any other option!

The first weeks were tough. I couldn’t help but compare myself to everyone else I saw around me. How flat I perceived their stomachs to be. How I perceived myself in comparison. I restricted and I purged but I also did get it under control. 12 weeks…2 episodes of purging. I tried to deal with it healthily and I will admit I struggled but being around old friends and adoptive family filled me with so much joy – there’s a phrase Greeks use in response to the question, ‘How are you?’ – mi hara – ‘full of joy’ and I think that in itself is a beautiful response.

One day I woke up insanely happy, I felt some sort of spring in my step and I even later in the day cried over text to my bestest. I simply felt happy. I’ve tried to change how I word things – I would say ‘everyone is so much skinnier than me’ and today I noticed I wrote ‘how I perceived…’ . Trying to develop my awareness of my eating disorder symptoms. I used to write I missed who I used to be before my ED and during this trip I realised I should never have focused on becoming a past version of myself because, simply put, we all change. And, yes, I’ve experienced some horrible things but that doesn’t mean I won’t become the best version of myself as a result.

I told him I loved him. The three words slipped out after weeks of me trying to hold them back. I knew I wouldn’t hear them said to me and that was okay but naturally not the greatest feeling. It got to me a bit but now? I’m completely different. I knew I wouldn’t hear them but I still wanted to say how I felt. I didn’t need to hear them back regardless of how much I want to hear them one day. I was brave enough to put my heart on the line because I cared about being honest with my feelings – for myself as much as for him.

Working really hard to separate my inecurities from reality.

Don’t get me wrong, it’s a scary sorta limbo. I know we’re pretty awesome and the fact he’s made a noticeable effort to text more as I’m more of a ‘communicator’ so to speak, the dedicated weekly face time slot and the simple fact that if I need him, really need him, he’s there…and yeah, we’re pretty awesome together…there’s no need to worry. I don’t want to reach that stage where I may have to deal with a guy who decides he’s never gonna love me but I can’t live in fear of something that’s only got a 50% chance of occurring. I’d probably self-sabotage it all that way anyway.

He does say something to me though – ‘I like you an absolute lot’

I think I like that more than ‘I love you’

Bit like how I prefer the Greek saying of ‘I’m full of joy’ rather than ‘I’m good/fine/okay’ because when I say the latter, some of it is a lie…but I’m always full of joy so to speak as I’m one of those people who finds happiness in the simplest of things, always happy even if I’m not okay with my body shape or my perception of myself.

Maybe I’ll start focusing on trying to be full of joy. Focused on the little things that bring me happiness rather than the things that make me feel okay about myself…

An llness that doesn’t care for age, height, gender or (rather ironically) weight.

My ED carries a smile. A smile that whispers to the world ‘I’m fine’. A smile that begs for someone to ask ‘what’s wrong?’ but knows that if anyone does, it’ll crack.

My ED walks with a head held high. One that’s determined not to fall. Held tall all day throughout the storm, pushing to make it through. But the storm just grows. Cruel voices that start out small but grow so loud.

My ED stands on shaky ground. Legs struggle with the weight. They walk with pride but before the mirror the ground always quakes.

My ED has hands that grip the sides of the bathroom sink or lean on the kitchen table. Everything tense, trying to pull me high.

My ED has eyes that are tired of the tears that fall regardless of their source. Eyes so blurry once again, yet again, salty stings running down each cheek.

My ED hasn’t managed to make me purge for four weeks and it’s barely skipped a meal. My ED has only gotten the scales out once but the war rages ever on. The voice tells me it’s because I’m surrounded by people, that I would never have done this on my own. The longing for the scales is only stopped due to a fear of the number being ‘too high’. My ED still hates the mirror and the hands still grip the sink. The legs still struggle to reach the fridge and the tears forever fall.

Forever falling.

But my ED isn’t necessarily me. It’s a huge part and that I will never deny but it isn’t me as a whole. 4 weeks and I’ve made it through, kinda, almost, but still, 4 weeks, that much is true. I’ve not been alone but that doesn’t necessarily mean ‘I’m weak’.

They see me eat and so they don’t think to ask because my ED carries a smile, the one that says that ‘I’m alright’.

The cruelest trick of all, because inside, I’m most definitely not alright.

Right now I am a mixture of very happy and very sad and I’m trying so very hard to figure it all out. I’m trying to figure out all these feelings and emotions and words and thoughts and I can’t work out what they all mean. Everything I feel lately seems to be a contradiction of itself and I do not understand any of it.

I suppose that we will always be too much for some people, too loud, too quiet, but we’re always going to be perfect for someone. Sometimes I really do wish I had that someone. That someone to hold my hand the other day when I saw him. That someone to come with me for my biopsy results that might tear my world apart again. That someone to hold me in their arms at night. Sometimes I think that someone is never going to appear.

I’m still in so much pain, I’m still hurting and feeling so worthless. I mean, maybe I don’t deserve to feel anything but worthless…maybe I am worthless. Maybe I don’t deserve to be more or to be treated better than everyone else has treated me. Deep down I know I deserve more, I know that’s the voice of the Demon but sometimes, just sometimes, I can’t help but listen to it.

Why did he not treat me like his girlfriend? Was he embarrassed of me? Ashamed? Why did that one, tell me no one would love me because I was bulimic? Is it true? Is it impossible to love the girl who makes herself sick? Was I too fat? Am I too fat? Why did he lead me on? Why aren’t my friends speaking to me? Why did he hurt me? Why did he lie? Why did they not help me? Did they even care? Did any of them ever care?

Is anyone ever going to care?

That voice is growing louder again lately and I’m fighting so hard to keep it under lock and key. I’m walking very shaky ground every day it seems, and I can tell I’m about to lose my balance. There’s so much pain coursing through my body but at the end of the day you can either focus on what’s tearing you apart or what’s holding you together.

I used to write about how I miss the girl I used to be, the one before the Demon emerged and before all the real-life demons too. I would write about how I wanted to be her again. How I wanted to find myself again and how I just wanted to love myself. It dawned on my today that I’m never going to be that girl again. I’m never going to be unbroken but that’s also okay. I realised that loving myself is remembering that when there was no one to wipe my tears I did it myself. That I picked myself up. That I put myself back together again. The Demons tore me down but I glued myself back together.

I sincerely hope my daughter never lies in bed crying all night about a boy, wondering what she did so wrong.

People tell you that ‘time heals’. They tell you that all you need is some ‘time’ to get over things. That is a lie. What people truly mean is that you get used to the pain. You eventually forget who you were without the pain. You finally forget what you looked like without your scars. I look back and that girl I used to be is exactly that, she is the girl I used to be. She wasn’t broken and she was full of ambition and hope. The girl I see staring back at me now is broken…but she is still full of ambition and hope. Hopeful that one day it will work out. That her someone will arrive and that someone will want her to be his someone. She has ambition pumping in her veins driving her for that dream life she wants, knowing that she truly is an expert at perseverance.

Time doesn’t heal anything. You can’t go back to the person before the hurt and pain. However, you can keep moving forward and that’s what I want to do. I want to stop looking back at the past 6 years and let it make me feel worthless. I can’t help but look back but I’m starting to get used to the pain. I suppose I’ve been used to feeling this hurt for 6 years now, why am I even surprised if someone else adds to it? I just really wish they wouldn’t. I really wish they took more care with me.